Abstract
BackgroundWe sought to understand barriers and facilitators to implementing distress screening (DS) of cancer patients to inform and promote uptake in cancer treatment facilities. We describe the recruitment and data collection challenges and recommendations for assessing DS in oncology treatment facilities.MethodsWe recruited CoC-accredited facilities and collected data from each facility’s electronic health record (EHR). Collected data included cancer diagnosis and demographics, details on DS, and other relevant patient health data. Data were collected by external study staff who were given access to the facility’s EHR system, or by facility staff working locally within their own EHR system. Analyses are based on a pilot study of 9 facilities.ResultsChallenges stemmed from being a multi-facility-based study and local institutional review board (IRB) approval, facility review and approval processes, and issues associated with EHR systems and the lack of DS data standards. Facilities that provided study staff remote-access took longer for recruitment; facilities that performed their own extraction/abstraction took longer to complete data collection.ConclusionExamining DS practices and follow-up among cancer survivors necessitated recruiting and working directly with multiple healthcare systems and facilities. There were a number of lessons learned related to recruitment, enrollment, and data collection. Using the facilitators described in this manuscript offers increased potential for working successfully with various cancer centers and insight into partnering with facilities collecting non-standardized DS clinical data.
Highlights
We sought to understand barriers and facilitators to implementing distress screening (DS) of cancer patients to inform and promote uptake in cancer treatment facilities
Study sample and recruitment We focused our study on lung and ovarian cancer patients because of the high potential for these cancers to be associated with distress; lung cancer is the deadliest cancer in the United States [19] and ovarian cancer frequently recurs within a short period of time and has moderate survival [20]
Of the facilities enrolled into the pilot study, the majority were Comprehensive Community Cancer Programs (56%), urban (89%), and located in the Northeast region of the United States (33%) (Table 1)
Summary
We sought to understand barriers and facilitators to implementing distress screening (DS) of cancer patients to inform and promote uptake in cancer treatment facilities. Distress in a cancer patient is defined as an unpleasant psychological, social, emotional, and/or spiritual experience that interferes with the ability to effectively cope with a cancer diagnosis, symptoms, or subsequent treatment side-effects [1]. Since 2015, the American College of Surgeons’ Commission on Cancer (CoC) has required distress screening (DS) of cancer patients seen in their accredited facilities [2]. Cancer patients must be screened for distress a minimum of one time at a pivotal medical visit as determined by the program (e.g., diagnosis, beginning and ending treatments, recurrence or progression), and preference should be given to visits at times of greatest risk for distress [2]. Barriers exist at multiple levels (i.e., patient, provider, setting) [9, 10]
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